"I’m really pleased that Demelza has launched The Nursing Appeal, because throughout this appeal you will hear from different nurses about their roles and they will all tell you something slightly different.

It is really important that we raise the profile of nursing in the children’s hospice sector and highlight the clinical expertise and career pathways of our teams.  A big part of this is through nurses telling their stories.

Hearing Demelza nurses’ stories will really help to bring to life what we do and the importance and complexity of our work. I realised early on in my career that to do this job well, simply having the nursing skills was not enough. You have to have a holistic approach, using therapeutic interventions together with medical ones. At Demelza I believe we do that really well. The day I realised this was a memorable moment for me. A colleague provided invaluable therapeutic support that made a necessary medical procedure possible and bearable.

I needed to pass a nasogastric tube to provide a young person with essential nutrition and medication. A nasogastric tube is a tube that carries food and medicine directly to the stomach, when swallowing in the usual way is not possible. This young man was a teenager and he hated it. Many previous experiences had led him to have a real fear of this procedure, he hated having the tube passed but it was essential to his care and comfort.

A colleague of mine had recently completed a course on guided imagery. Guided imagery is a form of distraction to give individuals undergoing medical procedures an alternative to focus on; providing relaxation, choice and some control of the situation.  She explained to him what we were going to be doing, and why, and they talked through his fears and anxieties. She asked him if he could choose to be anywhere else, where would he be? He said he wanted to walk on the beach again. He couldn’t walk anymore and could no longer get out to the beach; but he wanted to feel the sand and the pebbles, listen to the waves and feel the water on his feet.

My colleague prepared all the necessary sensory equipment, and I prepared all the medical equipment. Once we were all ready, he closed his eyes, she pressed play and the sound of waves and seagulls filled the room. She talked him through arriving at the beach, walking on the sand, picking up pebbles and paddling in the water – at each stage using the sand, pebbles and water to fill his senses. Once he was fully relaxed, I was able to gently and carefully pass the nasogastric tube without trauma.

I don’t know why anybody wouldn’t want to be a children’s palliative care nurse. It’s so rewarding, and incredible to know what a significant positive difference we can make for children and families.

 

My hopes for the future

I think that what the Demelza nursing and care team do is amazing, I feel fortunate to have colleagues who are so driven, determined and passionate to get the best for the Demelza families. Therefore, I think my hopes and dreams are that we will be doing more of what we are doing and reaching more children and families that need us.

Right now, we can only support 1 in 5 children who need our care, and we know that the numbers are going to increase over the coming years. There is such a demand for our services.

The big thing from a strategic point of view would be making sure we are delivering the care where children and families want it, so that we are being truly responsive. As we develop our services in the future we need to be led by the wishes of the child and their family, putting the right services in place with the right people and skills to make it easily accessible when needed.  To do that, we need to expand our existing services – residential care, day care, community care and care at home. This also includes growing our provision for end of life care at home, working with our fantastic community partners more to deliver complex palliative care in children’s homes – it’s not about Demelza taking over, it is about building on existing partnerships, sharing expertise and furthering our work with local community nursing and medical teams to enable the right care, in the right place, by the right person at the right time.

But, of course, to do that we need to raise more funds and recruit more nurses."

 

With your help we can make a difference. If you would like to help us to reach more children, young people and families that need our support in Kent, East Sussex and London by donating, please visit our main page for The Nursing Appeal.